I am learning a new language at this late age of my life. No it isn’t French or Spanish, it is Cancer Speak. This is a language and use of terminologies that I only knew at a surface level and to be perfectly honest, never wanted to know more. I was content to know enough to help others if I could or at least understand what they might be going through. I now wish I had been a little more selfless and a lot more involved with anyone who had to face this diagnosis.
Breast cancer is not a fun experience but I am a lover of gifts and this week I received another one from Upstate Oncology Center. Various groups or individuals contribute and create gift bags filled with many useful and comforting items. This is an amazing donation from thoughtful people and I am very thankful.
I said I would share my journey with all of you and I guess that means for better or for worse. I am always honored when a fellow cancer patient shares their cancer stories: people like Mike Welch (www.facebook.com/michael.welch.39108), Emma Tiebens (www.facebook.com/emmatiebens) and Kim Sackman (www.facebook.com/kim.sackmann.1) as well as many others who I will disclose in future blogs. Each of these individuals told their stories even with the gory details in hopes of helping others who have been or will be diagnosed with Cancer.
My blog is late this week because I had to process what I learned at my Oncologists. I left his office very angry and just do not know what to do with all these emotions. I get tearful but I don’t actually cry because I am afraid I may break down and truthfully, there is only me to pick up the pieces. That is one fact I understand most—this is a journey for one. You may have a great support system, you may have a wonderful and encouraging spouse, but the pain and fear are yours. They have their concerns for your welfare and of course they will worry about how you will feel or if you could die but they are not facing the pain of it all, not the way the cancer patient does. And no one would want them to, not really. But I am sure there will be moments when we wish they could take some of it away.
Dr. Benjamin was very straightforward and I really appreciate that but not the news he had for me, no not so much. After 2 FISH tests submissions I am definitely HER2+. In plain English, this means it is best to do chemotherapy before I begin radiation. The tests were not complete prior to my surgery because normally they do the chemo to reduce the tumor before lumpectomy. But also, because I am large breasted and have wanted a reduction for several years, I could afford to have lumpectomy and still have a great deal of breast tissue to work with. I had hoped to avoid chemotherapy as I am sure all cancer patients would.
- HER2 (human epidermal growth factor receptor 2) is one such gene that can play a role in the development of breast cancer. Your pathology report should include information about HER2 status, which tells you whether or not HER2 is playing a role in the cancer.
- HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells have a gene mutation that makes an excess of the HER2 protein.
- These cancers tend to be more likely to spread than other types of breast cancer, particularly to the brain. HER2–positive metastatic breast cancer will spread to the brain in up to half of patients. Drugs that specifically block HER2 to stop the growth of cancer cells are called HER2-targeted therapies
This all reads kind of scary to me and I know the odds are really better with chemotherapy and radiation and that breast cancer is the most curable cancer. Yet not feeling too comfortable with all these terms and more importantly having to do chemo. I sat stoically as he explained the coming year for me but inside I was screaming. I am so angry about this. I probably would be anyway but since I am weakened by all the other health issues I face, this just seems to be too much for me to accept.
We went over why I keep getting MRSA and yeast infections (because the Actemra infusions I was on for RA not only suppressed my autoimmune system another side effect is skin rashes and infections). I chose that protocol because the damage to my lung tissue was not stopping and I was facing more bouts of pneumonia and congestive heart failure. In looking back at my Facebook memories, from 2013 through 2016 I had bronchitis or pneumonia several times each of those years. It was so bad and lasted so long that I knew I had to do something. The Actemra calmed those symptoms and 2017 has seen no bronchitis or pneumonia to date. Of course another contributing factor is being isolated at home all winter (because of the MRSA I had to avoid crowds for the majority of winter when germs are at their worst).
The RA had left me with Pulmonary Fibrosis so I am always short of breath during any movement and have swelling in my feet so that they need to be up more than down. Add that dumb hip that is end stage degeneration and I already used a walker and had limited mobility. Now add susceptibility to infections (and that I will not be considered MRSA free until it has been 2 years since any outbreak) and there are concerns for how to proceed.
Dr. Benjamin is very aware how my health issues present some roadblocks to certain treatments so we are starting with a low dose of Taxol and Herceptin to see what I can tolerate. Remember this is a person whose RA and breathing issues prevent me from having an MRI and from even laying flat for other procedures. Without Predisone to help with joint pain I cannot even lift my arms for the examinations or breathe well enough to walk. Now I will be adding 12 weekly rounds of these anti-cancer drugs, each that carry side effects of concern that I already deal with daily.
Here are a few effects of what COULD happen (it is not always this way but these are possible).
Taxol –anti-cancer therapy drug
Side effects:
- Hair loss
- Nausea and vomiting
- Pain in joint and muscles
- Diarrhea
- Mouth sores
Herceptin –moncional antibody used to treat metastic {spread} breast cancer
Side effects:
- Headache
- Diarrhea
- Abdominal pain
- Back pain
- Infection
- Flu-like symptoms
- Vomiting
- Cough
- Shortness of breath
- Rash
- Dizziness
- Swelling of feet and ankles
These are the common side effects; there are many more serious ones. I understand that I may not have most of them or I could have all. If you follow me then you know I do not have the best medical luck in the world. And yes I say luck because I refuse to believe it could be more spiritual than that. Suffice to say I am going to feel sick and very exhausted. How much more I cannot imagine since sleep is something I struggle with. I am happy to be at 3 hours at a time right now. Maybe this will allow me to sleep more deeply when I need it—that could be a positive side effect.
I am learning vocabulary I prefer to only hear from a distance, not so personally. Even the word Oncologist bothers me right now and I know I am overly sensitive at the moment. But I am still angry about all of this. I have a beautiful 5 year old granddaughter whose life this will impact too. I tried to explain about the baldness but you know she is a just a little girl, she sees baldness as being infant-like. She told me I would was going to look like lots of those babies we see on shows with no hair. That child like observation is actually comforting. Only those infants do not have a deep crevice in the middle of their forehead (an inherited frown line that looks like a scar) that they have kept covered with bangs for 40 years. Of all that bothers me about losing my hair that is the most troublesome—how to not have to see that daily. I guess I will be looking for hats and scarves that will come down over my forehead and make that a little less annoying for me. No wigs I can say for sure, I get hot when it is 40 out so I will not tolerate a hot wig. And I do not think I will be brave enough to expose my scalp to the general public, just not the look for me.
Does this seem vain and minor in the scheme of things? I don’t think so. Yes, I want to be cured totally and I will do what is necessary but to look terrible in the process is just another cross to bear. My mind cannot even go to how sick I might become because it seems I have been sick for so long that I no longer remember what well feels like. I just wanted to get my life back so I could enjoy my girls McKenna and Leah. Their smiles are my medicine.
I get my port put in on Wednesday, and then a heart scan and blood tests. After those I will be all set for first round of chemotherapy on May 4th. May I just say—YUCK! I will have 12 weekly rounds, then the next 9 months every 3 weeks. I am not sure if the radiation is simultaneous as I did not get that far because sometimes I shut down over bad news and have to ask those questions and go over it all again.
I am so grateful for friends like Judy Watters and Jen Fournier who have allowed me into their lives and their cancer experiences. Judy had a mastectomy and more extensive surgery then I will face but she has taken the time to share these details with me. Jen actually has the exact diagnosis as I do and a year later she is doing well and so encouraging. I cannot express my gratitude for these women and so many more.
It’s time for me to watch the One Mouse Dancing and Song show, a real boost to my low spirits. We are diffusing Young Living Lime, Lemon and Tangerine and it is so uplifting I just can’t stay in the dumps, at least not till darkness comes and I am alone with my thoughts and fears. There is also more one more term that is not exclusive to Cancer Speak but is very very important—HOPE. More on that in later blogs.
Live Laugh Love
Debbie
